share: The Story of My Thyroid, Part 1—Why Terms Like TSH, T3, T4, and Saliva Tests Should Be Part of Every Woman’s Vocabulary
When I write these blogs, I really try to keep things as light as possible, even when I’m telling you about a serious health issue that I’ve dealt with.
But sometimes, I’ve had such a negative experience with something, I’m afraid it will be hard to put a positive spin on things.
Sadly, such is the case with the story of my thyroid problem. Or, as it turns out, the lack thereof.
Let’s start at the beginning, by talking a bit about the small gland inside your neck that has a giant influence on your well-being. The thyroid is the barometer to your whole body. It has an enormous impact on your endocrine system and your overall health.
Unfortunately, it seems that many doctors don’t give it much credence, or perform the proper tests to make sure it’s functioning as it should. At least, that was the case with me.
Like so many of my health problems, my thyroid story goes back to when I had my hysterectomy and my hormones were all out of whack. I was having some symptoms that were compatible with an over-active thyroid (things like sluggishness, sleeplessness, cognitive issues like decreased concentration, etc.), so I was given a blood test, diagnosed with a hypothyroidism and put on medication for it.
At the time, I wasn’t as into patient advocacy as I am now, so I confess I didn’t do any research on the subject or the test I had done and I didn’t get a second opinion. I accepted my doctor’s diagnosis as fact and began taking the medication.
Since that time, I’ve done a ton of reading and research on this matter, and I now know that I should have been given a comprehensive blood test that measured three very important things: a thyroid-stimulating hormone, or TSH test, that measures your level of this particular hormone, and also thyroid hormone tests that measure amounts of 2 hormones called T3 and T4. These 3 tests are conducted using a simple blood draw.
Ideally, your doctor should also give you a pretty good amount of water to drink and palpitate or feel your neck while you are swallowing. This will allow him or her to check your thyroid’s size.
Sadly, this is not what happened with my case. In my next blog, I’ll continue with the story of what happened with me and my thyroid. In the meantime, I’d love to hear from you, and how your physician checks your thyroid when you go in for a check up.
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What I have learned is that many doctors don't know much about Thyroid condition and what tests to do. Besides TSH as you said T3 & T4 levels should be tested. What many don't do is to test Free T3 which is very important because total T3 & T4 does not show the amount of it is being used by your body to say it in easy terms.
I have learned the hard way that it is hard to find doctors that understand this and also listen and dose according to symptoms. Many patients are told they are at the correct level of Thyroid replacement meds but their symptoms continue. It is not 1 dose fits all issue and without the right doctor that doses based on symptoms you can deal with years of being misdiagnosed and given additional meds for depression, joint pain, chronic fatigue, headaches, weight issues, etc.
I am still looking for the right doctor that will get me to be the old me again. I have an appt with an thyroidologist that I found through this website and have high hopes. At least I am educated now and know and understand everything much better.
For anyone dealing with hypothyroidism, I strongly suggest getting books on it and self educate. My first book was Living well with Hypothyroidism by Mary Shomon. From there on I have read many more books and found several great websites to help me. But that book explained the basics to me.
Good luck to all in your search to better health!
May 17, 2009 - 4:02pmThis Comment
Thanks for the great information. I'm going to recommend his to all of my friends.
May 18, 2009 - 9:20amI have have been hypothyroid since going through menopause. I am now 71 years old. I have been stable all these years on .112 mcg synthroid. Just this week I had a thyroid test which showed tsh 3rd gen @ 0.235 uIU/mL @Free T-4 @ 2.29 ng/dL. I need to know for sure if this indicates that I need my synthroid dose upped to 150 MCG???
My doc (Internist) has made a few errors with me lately, causing me to loose some trust in him.
Please help!!
Thank you.
Janice
June 3, 2009 - 7:30pmHow have you been feeling physically? When looking at your labs, it is important to review how your labs are compared to previous labs and also looking at the range of your labs for normal results (normally on the right hand side of your results). if your TSH is 0.235 and the range says normal is 1.0-3.0 your TSH is low with means you need to come down on your synthroid. If you TSH range is 0.135-0.300 on your labs you are right in the middle where you should be.
But again the main thing to go by (and hard for doctors to follow) is by how you feel, not just what your bloodwork says. What are your symptoms?
I joined a very knowledgeable group on Yahoo. Even though they favor Armour, they still can help you interpret your labs and steer you in the right direction.
http://health.groups.yahoo.com/group/NaturalThyroidHormones/
June 4, 2009 - 5:21pmI am 71 years old, women and my TSH is 9.9 and I have no symptoms at all. I am healthy happy person.
June 27, 2009 - 3:57pmMy doctor wants me to have all these tests, and I will not have them. About 3 or 4 years ago, he told me again about my THS tests, so I went to the medicine shop and bought natural, stuff for the Thyroid.
After about 2 months, my throat felt like it was pulling in front, so I stop and it took me 2 or 3 months
to withdraw from them, it only told me that I mite not have Thyroid problems. I only take natural vitamins for my health. Thank you, Barbara
9.9 is not good you could go into a coma if it reaches above 10 you need to get your levels down.
July 12, 2009 - 11:11pmJust wanted to clarify here. You said you have hypothyroidism, but said you have an over-active thyroid. I think you meant to say you have an under-active thyroid. An over-active thyroid would be hyperthyroidism.
July 6, 2009 - 11:38amMy TSH is 9.83 my doctor told me to come back in six months said I had Lupus. I went to see a doctor for Lupus she said not lupus an extremely low thyroid. I am going to doc tomorrow hopefully he gives me meds I feel awful hair is falling out have no energy I am 25yrs old weight hasn't changed 120lbs and 5'7' I guess because of weight maybe he thought I was fine. But he has a lot of explaining to do.
July 12, 2009 - 11:07pmMake sure that your doctor is checking for FREE T4 and FREE T3. The "FREE" denotation is very important...our hormones cirulate in our blood bound to protein and free frrom protein. When the hormone is bound to protein, it is not active and therefore not a value we really want to check. If your doctor is ordering FREE hormone your are testing for the active amount of hormone in your bloodstream...a much more acurate test.
July 15, 2009 - 4:42amI cheated on my thyroid labs and drank coffee (black) the morning of my tests. I've been started on Levothyroxine (0.05mg) but I suspect my tests weren't accurate. Thanks to these notes, I will find out what the VA (Veterans Administration) testing included. As to my Dr. exam, she briefly touched my throat in my post-lab exam checking for a goiter or something. I missed 4 days of the meds while waiting for the refill from the VA. I don't know if I should continue the meds while I seek a second opinion. At least this time I'll know more of what I'd like in the lab work. Thanks for the insight, Linda
July 17, 2009 - 1:25pm